Treatment decisions

Friday 30 September, 2011

Reviewed: Dr Malcolm Feigen, Senior Radiation Oncologist, Austin Health; Dr Paul Jenkinson, GP; Mary Duffy, Lung Nurse Specialist, Peter MacCallum; Prof Bill Musk, Respiratory Physician; Kathryn Turner, Social Worker, Slater & Gordon Lawyers ; Jane McDermott, Principal, Maurice Blackburn Lawyers; Asbestos Diseases Society of Victoria

On this page: Staging the disease | Talking with doctors | Talking with others | Getting a second opinion | Taking part in a clinical trial | Follow up care | Research into mesothelioma

Sometimes it is hard to decide which is the right treatment for you. You may feel that everything is happening so fast that you do not have time to think things through. Waiting for test results and for treatment to begin can be very difficult.

While some people feel they have too much information, others may feel that they do not have enough. Ask your doctor for clear recommendations for treatment. You need to make sure that you know enough about your illness, the possible treatment and side effects to make your own decisions.

If you are offered a choice of treatments, you will need to weigh up the pros and cons for each treatment. If only one type of treatment is recommended, ask your doctor to explain why other treatment choices have not been advised.

Some people with advanced cancer will always choose treatment, even if it only offers a small chance of response. Others want to make sure that the benefits of treatment outweigh any side effects. Still others will choose the treatment they think offers them the best quality of life. Some may choose not to have treatment except to have any symptoms managed to maintain the best possible quality of life.

It is important to discuss all your treatment options with your specialist. Ask what the pros and cons of each treatment are and about any long-term side effects. You want to be sure you can achieve optimal outcomes in a difficult situation. Involve your close family, friends and GP in your decision process. (Jed, 55)

Talking with doctors

You may want to see your specialist cancer doctor a few times before making a final decision about your treatment and care. You may also find it helpful to talk with your GP. Many GPs are an excellent source of information about palliative care. It is often hard to take everything in, and you may need to ask the same questions more than once. You always have the right to find out what a suggested treatment means for you, and the right to accept or refuse it and to seek a second opinion.

Before you see the specialist, it may help to write down your questions. There is a list of questions to ask your doctor at the end of this booklet, which may help you. Taking notes during the session can also help. Many people like to have a family member or friend go with them, to take part in the discussion, take notes, or simply listen. Some people find it is helpful to tape record the discussion, but check with your doctor first.

Talking with others

Once you have talked about treatment options with your doctor, you may want to talk them over with family or friends, with nursing staff or your GP, the hospital social worker or chaplain, or your own religious or spiritual adviser. Talking it over can help to sort out which course of action is right for you.

You may be interested in looking for information about mesothelioma on the Internet. While there are some very good websites, you need to be aware that some sites provide wrong or biased information. 

Getting a second opinion

Seeing another specialist and asking for their view on your cancer and its treatment options is known as ‘getting a second opinion'. Some people feel uncomfortable about asking for a second opinion but this is common practice. Most cancer doctors understand why patients may want to do this. People say gaining the opinion of another specialist helps them feel more in control of their cancer and its treatment.

Your specialist or local doctor can refer you to another specialist. You can ask for a copy of your results to be sent to the second-opinion doctor. You can still ask for a second opinion even if you have started treatment or still want to be treated by your first doctor.

I think you need to trust your specialist. If you don't, then get another one. But if you trust them, and work with them, you'll come out as best as you possibly can. You don't have to be friends: they may be quite abrupt, and may not want to sit at the end of your bed and have a chat. But it's the trust that's important.

Taking part in a clinical trial

Cancer Council Victoria supports participation in clinical trials. They are the most accurate way to determine the effectiveness of promising new treatments or new ways of combining cancer treatments. Always discuss treatment options with your doctor.

If your doctor suggests taking part in a clinical trial, make sure that you fully understand the reasons for the trial and what it means for you. Before deciding whether or not to join the trial, you may wish to ask your doctor:

  • What is the standard (best available) treatment for my cancer if I don't go in the trial?
  • Which treatments are being tested and why?
  • Which tests are involved?
  • What are the possible risks or side effects?
  • How long will the trial last?
  • Will I need to go into hospital for treatment?
  • What will I do if any problems occur while I am in the trial?

If you decide to join a randomised clinical trial, you will be given either the best existing treatment or a promising new treatment. You will be allocated at random to receive one treatment or the other. In clinical trials, people's health and progress are carefully monitored.

If you do join a clinical trial, you have the right to withdraw at any time. Doing so will not affect your treatment for cancer. It is always your decision to take part in a clinical trial. If you do not want to take part, your doctor will discuss the best current treatment choices with you.

Most trials on offer for people with mesothelioma patients will be phase I or II. The Victorian Cooperative Oncology Group and Clinical Trials Office have developed a clinical trials database to make it easier for people affected by cancer and health professionals to find suitable clinical trials. This database was funded by the Victorian Cancer Agency.

Visit www.cancervic.org.au/trials for more information about clinical trials for cancer.

Follow-up care

After the completion of your treatment, you may need to have regular check-ups. Your doctor will decide how often you will need check-ups - everyone is different. Your check-ups will gradually become less frequent if you have no further problems. However, because mesothelioma is often diagnosed in the advanced stages it is likely that you will continue to have regular check-ups or as you need them. If the cancer comes back, you may need further treatment and it may be different from the first treatment.

It is important that you tell your doctor about any new symptoms.

Research into mesothelioma

Scientists and doctors are looking for new ways to prevent, diagnose and treat mesothelioma, and are seeking to discover whether other factors, apart from the known causes, may cause the disease.

Research into causes and prevention

Almost all mesothelioma cases are linked to asbestos exposure. Other causes have been considered, such as a mineral called zeolite. However, as yet there are no other scientifically proven causes. More research is needed.

A lot of research is looking into exactly how the asbestos changes the mesothelial cells in the body to cause the cancer. Gaining a better understanding of how the asbestos fibres cause cancer may help us develop ways to prevent this change from happening in the body.

Research into diagnosis

With some cancers, doctors are able to use a test called a ‘tumour marker' to help diagnose the cancer. This is done by measuring the level of a protein in the blood given off by the cancer cells. An example is the prostate specific antigen (PSA) test for men to help diagnose prostate cancer.

Tumour markers cannot make a definite diagnosis. However, they can help doctors making an earlier diagnosis and monitor how well treatment is working. If doctors could develop a tumour marker for mesothelioma it could help in the same ways. Scientists are studying two markers, called serum mesothelin-related protein (SMRP) and osteopontin. Both these markers seem to be raised in people with mesothelioma. More research is needed before we will know how helpful they really are.

New drug treatments

Doctors have been trying to work out which are the best chemotherapy drugs to help treat mesothelioma. While the standard drugs such as cisplatin, pemetrexed and carboplatin have shown to help, their effectiveness is still fairly limited. Doctors are looking at how they can improve this by:

  • using new chemotherapy drugs
  • using known chemotherapy drugs in different combinations
  • combining chemotherapy with other treatments.

Chemotherapy drugs being tested for mesothelioma in clinical trials around the world include: gemcitabine, usually in combination with cisplatin; mitomycin; irinotecan; topotecan; vinorelbine; and vinflunine.

Trials are also looking into injecting chemotherapy that has been heated up directly into the abdomen following surgery to help treat peritoneal mesothelioma.

Another new chemotherapy drug called ranpirnase is being trialled in Germany and the US. It is not available in Australia. It can be very frustrating to read about new treatments that you do not have access to.

You may worry you are not getting the best treatment. However, if a drug becomes a safe and effective standard treatment for a cancer then it will become available in Australia.

New ways to use radiotherapy

Radiotherapy is not generally useful in treating mesothelioma. This is because the cancer can grow in different directions and it is not well defined. This means it is difficult to target with radiotherapy and avoid surrounding healthy tissue.

Doctors are looking at new ways of delivering radiotherapy. Eventually, if it is possible, it will be used to help to treat mesothelioma. For information, call the Cancer Council Helpline on 13 11 20.

New approaches to surgery

Many people with mesothelioma are not able to have surgery. Doctors are looking at using chemotherapy and radiotherapy along with surgery to get better results.

There are also trials currently looking at how to help control the fluid build-up in the pleura that can happen in the advanced stages of the disease. Currently doctors drain the fluid and stick the pleura together (pleurodesis). Some research suggests that removing the pleura (a pleurectomy) may be more effective.

Research into photodynamic therapy (PDT)

PDT involves injecting a drug that makes cells sensitive to light. The drug spreads through the body and is mainly attracted to cancer cells. The drug is usually injected just before surgery. During surgery or a few days after the surgery, a small tube with a red laser light at the end of it is placed into the chest cavity. This laser light kills the cancer cells.

This treatment is still very experimental. At the moment there is no evidence that PDT helps cure mesothelioma. 

Other research

Several other therapies are being tested as treatments for mesothelioma. They include:

  • cancer vaccines
  • growth factors for blood cells
  • monoclonal antibodies
  • drugs that stop the growth of cancer blood vessels
  • gene therapy.

All these therapies work in different ways. Testing is in the early stages. If you are interested in finding out more, ask your doctor if they have up-to-date information on clinical trials into these treatments.

 

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